事件记录
播音员: Medical news and research from University Utah physicians and specialists you can use for happier and healthier life. 您正在收听的是范围.
面试官: Josh Hensley was told not once but twice in his life that his newborn child has a birth defect called congenital diaphragmatic hernia, 也被称为CDH. 可悲的是，这也夺去了他们两人的生命. 从那时起, he's brought awareness to this defect to help other parents with children with the same disease understand more a little bit about it. 乔什，谢谢你今天讲你的故事.
杰克: 不客气. 很高兴来到大发娱乐.
面试官: You had a lot of frustration, from what I understand, during this process. 跟我说说这个吧. Just lack of support, lack of information, lack of knowledge.
杰克: 是的. So if you're not dealing with pediatric surgeons or specialists, 新生儿学专家, 那些处理更严重病例的人, 没有人知道. Our pediatrician did a 真的 good job of informing himself so he could provide us good care, but there were multiple times we went to the doctor's office and he wasn't there. We saw another doctor and I knew volumes more about our daughter's condition and the side effects of her condition than the doctor did. 这并不罕见. 我听很多家长说过. 有一位家长告诉我, "Oh, the doctor went back and he grabbed his medical book and opened it and read to us out of his medical journal the description of the disease.î
面试官: So, we talk about cystic fibrosis, every doctor knows about that.
杰克: 乔大家也一样.
面试官: But this is just as common, one in 3000 children, but yet there's so little knowledge about it. 这是为什么？?
杰克: 我认为部分原因是, 在很大程度上, once our kids go home from the hospital and are considered what you would say is stable, you can look at a kid who has CDH and never know that there was anything wrong with them because the long-lasting effects are on the inside. 没有真正的外在表现表明他们患有CDH. 如果你没有看到他们的伤疤，你就不会知道.
面试官: How do you bring awareness to the issue given the fact that it is not an externally manifesting condition?
杰克: One of the campaigns that we do is called Save the Cherubs. 所以大发娱乐有幸存下来的孩子. 大发娱乐买翅膀，让他们戴上翅膀. Children who are non-survivors are just the wings and we have pictures at all kinds of landmarks throughout United States and throughout the world, 真的. 顺便说一下，ìHere是埃菲尔铁塔的一对翅膀. 请注意.î It's a way to give an outward manifestation to an inward . . .
面试官: 问题. 是的.
杰克: 大发娱乐做各种各样的活动. 大发娱乐做了很多社交媒体宣传活动. 大发娱乐做了很多筹款活动. 大发娱乐去了华盛顿特区.C，并游说国会，以提高人们的意识和资金. But it's 真的 a mom and pop grassroots organization of just family members that volunteer their own time and their own travel expenses just because we understand each other better than anyone else could ever understand us.
面试官: How will that translate into money, do you think, the awareness? 他们的策略是什么?
杰克: 所以在会见国会助手时, they said the reason that cystic fibrosis gets $79 million a year from NIH is because 20 years ago cystic fibrosis parents were sitting in this chair in this office, 和像我一样的人说话. 和 they kept coming back and they kept coming back and they kept coming back. 和 so that's what it takes is to continually make enough noise until you can't be ignored and everybody realizes, “嘿, 这是一个相当严重的事件. 我以前可能不知道，但我现在知道了. 和, 是的, this is probably something we should look into because that type of mortality rate, 在我看来, 在这个时代, 是不可接受的.î
面试官: 你希望从你的工作中得到什么? I know you've dedicated, like you said, a lot of your own personal time. 这已经成为你的使命，你自己的钱很多. 一天结束的时候，你希望发生什么? 回报是什么？?
杰克: The payoff is to let parents who get this diagnosis know that they're not alone, 他们不需要自己面对. They don't get a lot of support from the medical community; they don't get a lot of support from family members. 尤其是在我这种情况下, 如果你的孩子死了, 甚至你的父母, 谁是世界上最有爱心和关怀的人, get to a point where they don't want to hear about it anymore.
面试官: 这是艰难的.
杰克: 这是人类的本性, 我理解，这不是他们的错, 但大发娱乐中有很多人明白这一点. 大发娱乐理解. 大发娱乐永远不会叫你安静. 大发娱乐会鼓励你们谈论它. 所以最主要的是, I just want people to know when they get this diagnosis that there is a large support network. 有大发娱乐，就有希望. There are people who will talk to you about it; there are people who will get out of their way to do what they can to support you. 和, 最终, I'd like to find some way to prevent this from happening because nobody should have to bury their child. 和, 最终, I'd like to have a 0% mortality rate with CDH.
面试官: What are some of the resources you'd recommend to those families?
杰克: 我在一个叫小天使的慈善机构工作. We've been around; we just celebrated our 20th anniversary. It was started by a mom whose son passed away at six and a half years of age due to complications of CDH. 大发娱乐每年都会召开会议. 大发娱乐有募捐活动. 这是我进入华盛顿特区的团体.C与游说有关。. 大发娱乐在全球有5000个家庭的会员, 这只是实际CDH社区的一小部分. But it is the largest charity that does the most awareness activities, the most research funding and where you'll find the largest group of people who get what you're going through.
何塞: 为了获得社会支持.
杰克: 是的.
面试官: 问题. Any final thoughts, anything I forgot to ask you or anything you feel compelled to say?
杰克: I've been dealing with the aftermath of CDH for 八年 and a lot of people say, "Oh, 八年? 你不打算向前看吗?“不，我不会离开，因为我不会放弃. 我不会停止. This is my life calling and I will do whatever I can because I feel not only do I owe it to my daughters, 他们都去世了, 我欠每个孩子的
播音员: Thescoperadio.大发娱乐是犹他大学健康科学广播. If you like what you heard, be sure to get our latest content by following us on Facebook. 只要点击scoperadio的Facebook图标.com.